On Monday, I needed to visit my glaucoma specialist whose office is 1 1/2 hours from home. A relatively new friend (she did not know me pre-FTD so is more accepting of me the way I am) switched work schedules around so that she could drive me there. Not only did we get a good report and the possibility of a laser treatment to improve my clarity of vision, but we both immediately thought of the same place to go for lunch and enjoyed it greatly.
On Tuesday, I needed to return to the Ophthalmology office to see my retina specialist. Yes, this was bad timing to schedule them back to back, but that's just how it worked out this time. That day brought us a pretty bad snowstorm. My sister was supposed to drive me there for this one, but she is recovering from a broken shoulder and gets anxiety when driving in bad weather. I knew I did not dare cancel this appointment because I knew I needed a shot into my eye to stop a retinal bleed, not something to be delayed by weather. My awesome brother in law gave up his day and drove us safely through the storm.
On Thursday, here we go with another transportation story. For local trips, I try to utilize our Senior Van Service which is awesome. Door to door service and only $1 or $1.50 per trip depending on the distance. Plus the drivers are extremely helpful. They even carry my groceries or other packages into my house when they bring me home. On this day, there were two other passengers in the van and a really friendly driver. The four of us were carrying on and laughing so much, I was disappointed when we got to my destination. Kind of sad that the van service is also my social life, but these trips actually do brighten my day and my attitude. This service makes it so much easier to accept not being able to drive.
On Friday, I went to see a pain specialist to get nerve blocks into my occipital nerves. It was another day of snow and another day with an awesome van driver. It was just the two of us as many canceled their trips. We exchanged stories and kept each other entertained which helped me to not think about the painful injections I was facing. In addition to dreading the shots, I was dreading the possibility of the doctor telling me there was nothing wrong with me and that it was all in my mind. Getting that answer so many times while trying to get the diagnosis of FTD, has really made me fear hearing it again every time I see a new doctor. My sister even braved the snow to join me at the appointment so I had help with explaining and understanding things. I also had the opportunity to explain FTD to this doctor and he accepted a copy of the NIH booklet so he could read more about it. Advocating and educating about FTD always brightens my day.
To top it all off, my husband did not waken me once through Friday night and slept late in the morning. Not only did he allow me a full night's sleep, but I was able to accomplish some things that required my fullest focus before I had to help him get his day started.
Notice that I skipped Wednesday. That day was fairly uneventful, That is, until I helped my husband get ready for bed as usual. I set his nighttime pills on the counter and reminded him to take them as he was going in to brush his teeth. I did not get even one continuous hour of sleep that night. He either called for me or wandered into my room being extremely confused. I even tried getting into bed with him, hoping to calm him down. He kicked me out. It wasn't until 8 a.m. that I discovered those four nighttime pills still sitting on the counter. I immediately gave him one of the Seroquel tablets and within thirty minutes, he was calm and much less confused.
Of course, I started blaming myself and asking myself if I could possibly be any more stupid. Then I realized, I was exhausted and not thinking clearly myself. Added to that, I learned a lesson to always check and make sure he has taken those medications before tucking him into bed. So it could be a good thing in the long run.
There were also those petty little issues I mentioned earlier. They could have really gotten me into a foul frame of mind throughout the week. I had two instances where someone was really snarky, demanding and critical... make that three. Each time, I was able to back off for a minute and dealt with what happened in a calm way. I realized that these were things that I did not cause and I was not obligate to "fix" anything. In each case, the other person calmed down without me coddling, wheedling or arguing as I usually would. I simply walked away from the situations or shut off the conversations.
Fortunately, this coming week should not require any out-of-town trips and only one scheduled appointment. Plus the friend who drove me to my Monday appointment will be dropping by to visit one day. My husband really enjoys her company and interacts with her more than he does with anyone else. She is my go-to person to stay with him when I know I am going to be gone on my husband's bad days or if I need to be gone longer than a couple hours in the afternoon. He is much more aware and able to care for himself between about noon to 4 p.m. and I still feel comfortable leaving him for only short periods during those hours.
I end this week pretty darned proud of myself for successfully identifying the good little things that happened, as well as successfully handling the bad ones. With my FTD, I have had to learn to break tasks down into smaller tasks. Now I am learning to take pride in dealing with the unexpected little things that complicate my life, trying to keep them small and not growing into ones that are impossible to deal with.
On one down note, I really, really wish I could find a way to make people understand the limitations that FTD puts on us. This includes, not just the physical limitations, but also the emotional ones and the difficulty we have to diffuse situations. If anyone has any ideas, I would sure like to hear them. I firmly believe this is the root cause of all the pesky bad little things that try to infiltrate my life. It is even more frustrating that the ones who don't "get it" are often the same ones who proudly tell others that they do.
That issue, of course, is a huge one that I probably will never be able to solve no matter what I try. I will just have to keep focusing on the good little things and continue to try to ignore or walk away from the bad ones.
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